Voices from the Opioid Crisis: 4 Years After the CDC Guideline Changed the Rules

The CDC guideline on opioid prescribing has seriously and often negatively impacted the lives of those with chronic pain conditions. Here, three people talk about their lives before – and after – the government intervened.

 

Four years ago, the CDC issued a guideline on opioid prescribing for chronic pain that led to many unexpeced tapers, abrupt discontinuations, and other prescribing changes. Here, three people living with pain conditions share how these changes impacted their pain, and their lives,

Tossed from Doctor to Doctor

Rebecca “Becca” West, Age 30, Easton, MA
Becca’s Pain Profile:

In January 2018, Becca West testified before the Massachusetts Legislature’s Joint Committee on Mental Health, Substance Use, and Recovery. She joined other individuals with chronic pain and advocates to voice their fears that an opioid bill filed by State Governor Charlie Baker would negatively influence their ability to get adequate pain medications

“Pain has taken away almost everything in my life,” Becca told the committee. “I've tried every single treatment available to me. Opioids are my last choice to have some semblance of a normal life,” she said, “but I can't find a doctor who will prescribe them to me on a long-term basis.”1

“I’m here begging for my life.”

Pain, severe and debilitating, has stalked Becca for more than half of her life. Endometrial pain set in in 2004 when she was 14. It took four years to get a proper diagnosis. When she was 16, symptoms of lupus surfaced. This time, the diagnosis took more than a decade. Becca’s disease wasn’t diagnosed until just last year.

“I went from a straight “A” student to one who couldn’t finish high school,” she tells PPM. After getting her GED, she enrolled in college but had to leave when her endometriosis and lupus symptoms flared again.

Why did the lupus diagnosis take so long? Becca says the reason is two-fold. While her symptoms were “often met with a lot of disbelief,” she acknowledges that, until recently, the only thing pointing to her having lupus (aside from her symptoms) was a positive ANA (the antinuclear antibody test is positive in most people who have lupus, but it also may be positive in many people who are healthy or have another autoimmune disease. Therefore, a positive ANA test alone is not adequate for a diagnosis of lupus.). “And doctors like to have more than that in the blood work before starting treatment,” she explains.

And yet the uncertainty around her lupus symptoms paled in comparison to the skepticism about her endometrial pain. Despite having a diagnosis, the reaction she got from doctors about her endometrial pain “was overwhelmingly negative,” she says. Over the years, she felt belittled and disbelieved. And there were hurtful comments. “I’ve been called ‘crazy, lazy, weak and hysterical,” she declares.

And more than once she was accused of being a drug seeker.

In her search for relief, Becca tried “countless medications, including many different anti-inflammatories, anti-depressants, muscle relaxants, anti-seizure drugs (eg, Lyrica and Neurontin), acupuncture, several nerve blocks, multiple spinal epidurals, Lidocaine patches and Lidocaine infusions, therapy, medical marijuana, Kratom, meditation, a TENS unit, hot and cold packs, ultrasound therapy, and mindfulness,” she says. “Basically if you can name it, I’ve tried it.”

“I’ve found that only opioids make a major impact on my pain and help me to be able to do some of the activities I used to enjoy,” she says. Before the CDC Guideline on Prescribing Opioids for Chronic Pain was issued in 2016, Becca was able to get opioid medications such as Percocet (oxycodone/acetaminophen) or Oxycodone periodically from doctors. “But now it’s impossible.”

Like so many people with chronic pain (an estimated 50 million in the US alone), she found herself “tossed from doctor to doctor because no one wanted to treat me.”

Image: iStock

This year, in March 2020, she turned 30 and finally found a new doctor who put her on a buprenorphine patch. (Editor’s Note: The buprenorphine patch is FDA indicated for the management of moderate to severe chronic pain in those requiring a continuous, around-the-clock opioid analgesic for an extended period of time – ie, chronic pain – as well as for opioid use disorder). Says Becca, “It’s the first pain medication I have had access to in a long time and the first around the clock pain medication I have ever been on.” She’s taking the highest low-dosage patch (20 mcg per hour), and while it’s making a dent in controlling her pain, it’s not enough to allow her to significantly increase her activity level and have less pain on bad days.

And she still has lots of bad days – days where she says it’s nearly impossible to get out of bed. Now, with the pain patch and a new lupus immunosuppressant medication (azathioprine), she appreciates the precious “several days a month where I am able to have a relatively normal activity level, something I haven’t had in years,” she says.

Becca says she also appreciates the odd “upside” of the COVID pandemic. “When COVID first started, I was terrified that I would not be able to get my pain medication as doctors’ offices were closing, and I was only allowed to get my prescription in person,” she says. “Ironically, it’s actually been a little bit easier because now my doctors do telemedicine and that means avoiding the hour-long, monthly drive to her doctor’s office for a prescription. And she doesn’t have the same intensity of anxiety, caused by a post-traumatic stress order she developed after years of what she calls medical mistreatment.

Unable to work due to her intractable pain, Becca finds comfort and solace in art, writing, and other creative pursuits. Painting nude self-portraits helps her “get back in touch with my body and my sexuality, which is very hard to hold on to when one has intense pelvic pain,” she says.

Becca's self-portrait.

Painting and writing provide a pathway to process her feelings, “to diminish the deep pain, anger, sadness, despair and embarrassment I feel when I need help to perform simple daily tasks or do things I feel like I should be able to or when, because of my pain, I miss family functions and other events that I wanted to go to with all my heart, such as my sister's funeral.” Through her art, she is learning “how to love my life, even though I am living with debilitating diseases at the age of 30.” (More on how people are using art to cope with chronic pain.)

Becca West is weary but not worn out. She has the unwavering support and love of her husband, Shane, and her cuddle-buddy, the couple’s Boston terrier named Ares, who is “always a great comfort, snuggling up in bed with me when I don’t feel well,” she says.

And even after days and weeks of lupus pain and flares, she’s quick to laugh, witty, compassionate and passionate about advocating on behalf of chronic pain patients like herself be it from her bed or the floor of a hearing room.

“We are taking a stand on our own, but many of us have our hands full being sick,” she says. “Right now, many pain patients, including myself, feel lost, alone, hopeless, desperate, and helpless when it comes to getting pain treatment and we need the medical community’s help. We want doctors to know that they need to take a stand for their patients who need pain treatment.”

 

Anxiety or Pain: An Agonizing Choice  

Sandy Miller, Age 59
Loveland, CO

Sandy's Pain Profile:

For years, Sandy Miller’s pain management regimen enabled her to “have a good life, make plans and function,” she recalls. A Certified Nursing Assistant, she was pursuing her dream of becoming a registered nurse when, in 2018, her pain meds were cut in half. She had been taking 10 mg of the opioid Percocet 8 times a day and a small dose of clonazepam for anxiety.

“I was getting ready to go into my nursing clinical but I had to stop because I couldn’t keep up with the classes … the pain was so unbearable, I couldn’t concentrate,” she says.

Since the opioid crisis hit, she says, she can no longer get quality care here in her state.

“Every day is a fight to keep going,” says Sandy, who has been “dismissed” by several pain doctors, often via a letter. “They didn’t explain why,” she says, “the letters just said, ‘We can no longer help you.’ I went to more than a dozen pain management doctors. I pretty much had exhausted all the specialists in my area.”

With her opioid dosage cut in half, Sandy succumbed to illicit ways to get the drug. For a while, she bought it from a friend “who was always getting more than he needed,” she says. By November of 2019, with that option gone, Sandy turned to other people she knew and sometimes “went to the street,” figuring out where to go through other pain patients.

According to Sandy, she was told that she couldn’t take an anti-anxiety benzodiazepine medication like clonazepam and opioids at the same time (FDA issued a black box warning for concomitant use of these medications in August 2016 due to potential serious side effects, including slowed or difficult breathing and death.People on chronic opioid therapy are routinely drug tested to ensure compliance. 

“A year ago, they took my clonazepam away cold turkey,” says Sandy, who suffers from severe anxiety as many people with chronic pain do. “For a whole year it made me isolate, I didn’t want to be with anybody, I didn’t want to go anywhere. I suffered and basically didn’t leave the house,” she says.

Editor’s Note: Anxiety disorders may be present in up to 60% of patients with chronic pain. For those who have chronic migraine, 50% also tend to have anxiety while 25% live with depression. In addition, 30% of people with chronic pain diagnoses have a higher incidence developing borderline personality disorder.3-5

So Sandy had to make a choice, a Hobson’s choice between pain and crippling anxiety. “I was told that I could have one or the other but not both,” she says. “I had to choose my mental health.” She knew that the only way to get her clonazepam back was to give up her pain meds. And that’s what she did. On Feb 27, 2020, she stopped all opioids (Editor’s Note: abrupt discontinuation of opioids is not recommended. FDA advised against this in a follow-up to the CDC opioid prescribing guideline in 2019.6 Always talk with your doctor about a tapering plan for the safest, best outcome).

Afterward, a psychiatrist put Sandy on .05 mg of clonazepam. Unable to work, she remains on disability. “But at least I’m able to deal with the anxiety a little bit better,” she tells PPM. And she’s working with a therapist on pain coping skills. Even so, “the pain is excruciating,” she says. “I’m existing, not living.”

 

Kathleen continues to hold out hope despite her experience with pain and opioids.

Desperation and a Suicide Attempt

Kathleen Kaiser, Age 58
Wichita, KS

Kathleen’s Pain Profile:

  • Neck: Substantial degenerative disc space narrowing, spurring on C3/C4, C4/C5 and C5/C6, arthritis of the facet joints, substantial cervical spondylosis.
  • Lower back: Multiple herniated or bulging discs, arthritis of the facet joints, spinal stenosis, spondylolisthesis, six fractured vertebrae and a fractured sacrum
  • Polymyalgia rheumatica
  • Sjogren’s Syndrome
  • Osteoarthritis in both thumbs

When the CDC opioid prescribing guideline came out in 2016, Kathleen Kaiser was concerned. The soft-spoken mother of three suffered from a multitude of painful chronic neck and back issues going back 15 years and a more recent diagnosis of polymyalgia rheumatica, a painful inflammatory disease that causes body wide aches and pains. Kathleen’s pain was being well-managed with morphine and oxycodone equivalent to somewhere around 120 MME (morphine milligram equivalents). “Pre-CDC guidelines, I was doing great. I had a life,” she says.

Kathleen asked her pain management doctor if he was going to decrease her dosage. Kathleen remembers him saying, “I’d never do that to you.”

But a year or so later, with increased scrutiny of physicians’ opioid prescribing, Kathleen’s doctor told her he was reducing her daily dosage from 120 MME to 90 MME, exactly what the CDC advised. Just like that,” she says. “No weaning; no discussion.” He decreased her daily morphine dosage from 45 mg per day to 30 mg (two 15-mg extended release tablets) per day and maintained her oxycodone at 40 mg (four 10-mg tablets) per day.

Soon after that decrease, Kathleen had three separate incidents that resulted in multiple bone fractures. She’s convinced that the prednisone she took to manage her polymyalgia rheumatica caused or exacerbated her osteoporosis and made her bones brittle. “No doctor ever told me that but that’s what I believe,” she says

In one incident, in September 2018, she fell while getting out of her car. She broke her left ankle in three places, sprained her right ankle, broke a rib, and further injured her back.

When she awoke from the surgery to repair her broken angle in “horrible pain,” she begged the nurse for something stronger. Ultimately, the doctor gave her an extra dose of Dilaudid (hydromorphone, an opioid).

Over the next few months, Kathleen pleaded with her pain management doctor for an implantable pain pump (these systems consist of a pump implanted between the muscle and skin of your abdomen and a catheter that carries pain medication from the pump to your spinal cord and nerves). “I was refused,” she says. She doesn’t know why.

She then “begged to do another trial spinal cord stimulator as it had been 9 years since the first time, but my requests were again refused,” she says. “They told me, ‘It will never work for you.’” (Find out if you may be a candidate for SCS .)

“I saw no way out,” she says. As pain took over her life, Kathleen made a rash decision. In February 2019, she filled her 30-day supply of both prescriptions (60 tabs of 15-mg morphine and 120 tabs of 10-mg oxycodone), took them home and downed them all. Fortunately her husband came home early and found her. She woke up 3 days later in the ICU.

According to the hospital psychiatrist’s notes, Kathleen’s first words were: “I know I’m f**ked now. I’ll never get another pain pill again.” She spent the next 2 weeks as a psychiatric in patient and two weeks in outpatient therapy.

And as she expected, her pain practice specialist “fired” her, she says. Kathleen was left to treat her pain with over-the-counter pain relievers, a TENS unit, and heat and ice. “I was unable to do anything but lay in bed and cry every day,” she says. And at one point she took to the street in search of pain relief.

At one point, she turned to the street for relief. “I am embarrassed to say that for 2 weeks, I used heroin,” she says, adding that she never injected it but smoked it. Her 14 days on heroin made her so sick and “so miserable” that she stopped taking it. “It was awful,” she says.

How did a self-described 58-year-old grandma know where to get heroin – sadly, through a family member with a history of drug abuse.

Fortunately for Kathleen, life changed for the better 2 weeks before Christmas of last year. On December 11, 2019, a new pain specialist that was willing to take her on implanted an intrathecal pain pump. “The relief was wonderful,” she says. The pump is currently dispensing 1 mg of morphine a day which is significantly less than the 30 mg of morphine she was taking in tablet form. “But since it doesn’t have to go through my digestive tract like pills do, it works,” she says.

When the COVID pandemic led to closures all over the country, Kathleen and her doctor had to struggle through some unexpected challenges on adjusting the dosage released by the pump, but she says she has recently been able to go back to the office and get the pump refilled. She is now getting 1.07 mg of morphine a day and now has a remote control that allows her to give herself up to three boluses (additional single doses) of 0.07 mg per day when a flare comes on.

Pain isn’t a stranger to Kathleen, but it’s no longer uncontrolled. “I feel even better,” she says. And when the pandemic passes, Kathleen plans to get back on her mobility scooter and back out into the world.

See also, the perspective from pain patient advocate Richard A, Lawhern, PhD, regarding progress in pain research and care.

Updated on: 09/03/20
Continue Reading:
The Opioid Crisis is Not Over, Neither is the Pandemic: How Pain Patients are Caught in the Middle
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